 Not every doctor sees Down syndrome as a treatable condition. Many will dismiss symptoms that would be alarming in a typical child because it's "just part of the Down syndrome". Thankfully there are some doctors who realize that Down syndrome is treatable. We are lucky enough to have our son Benny in the care of one such doctor, the wonderful Dr. Erica Peirson.  Since working with her to correct Benny's hypothyroidism we have seen him go from an infant with incredibly low muscle tone, near constant tongue thrusting and poor health to a strong little boy whose trisomy 21 isn't having such a huge impact on him anymore.
Despite these obvious signs of congenital hypothyroidism as a newborn, Benny would still not have been diagnosed to this day if it weren't for Dr. Peirson. All of his other doctors would only look at his TSH and T4 levels, which were only slightly off. Dr Peirson looked at all of Benny's thyroid levels and discovered that his reverse T3 was off the charts. This meant that Benny wasn't absorbing the T3 into his cells. He was suffering from hypothyroidism just as much as if his T4 or TSH were high. I am so grateful that we discovered this fairly early on. My only wish is that we had found out even earlier. Untreated congenital hypothyroidism causes irreversible brain damage, and the longer you wait to treat it the worse it is. Unfortunately, many babies born with Down syndrome will suffer this avoidable brain damage because so many medical professionals will dismiss their obvious hypothyroid issues as being caused by their extra chromosome and fail to run all of the labwork necessary to identify and treat the issue. After witnessing the incredible transformation in my son and realizing how many babies born with Down syndrome are not benefiting from this information, I asked Dr Peirson if she would talk to me about these thyroid specific issues related to Down syndrome on our T21 Action podcast. The result is this truly amazing interview that I am so very proud of. I hope that you will listen to and share this podcast with anyone you think might benefit.
9 Comments
Taymar
12/30/2015 02:25:46 pm
That's very interesting, my son has had cranial work but I haven't heard of Upledger's before. I will look into that.
Cassandra
12/29/2015 03:25:31 pm
Please help! My best friends son has downs- he is in 2nd grade and cannot speak! I want to help her get some answers. She is going to Children's Hospital I Boston and she requested that the dr write an order for T3 test but he is refusing- saying the TSH and T4 levels do not indicate any medical necessity for the test! What can she do??
Taymar
12/30/2015 02:31:24 pm
On the podcast episode page there is a list of links that she can use to download studies to share with the doctor if they are open to it. Many doctors don't like their patients to share information with them because they feel that since they have the medical degree they are more knowledgeable. This is unfortunate because doctors are busy and don't have time to keep up with the latest research.
Uzma
9/28/2016 02:59:46 am
Hello plz am living in Sydney my daughter is 1 month old diagnosed with Trisomy 21 she still in hospital dr giving her thyroxin cos they told me her T4 is high plz help me if trisomy 21 is treatable my daughter does not have heart defect only now having feeding problem
Freya
9/28/2016 03:55:20 am
I'm no expert in the medical problems related to Down Syndrome but I know I would:
Taymar Pixleysmith
9/28/2016 02:05:28 pm
Uzma, first of all, congratulations on your baby girl! I wish I could give you a hug right now. Feeding problems are the worst! I'm sure you are very stressed right now. Leave a Reply. |
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April 2022
AuthorSince becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy! Categories
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